When a patient sees a doctor, the patient’s personal folder comes along for the ride. The folder contains the patient’s "medical record," which is a unique collection of information that identifies that person, the illness, and all the treatments that have been tried. It is the equivalent of fingerprints at the FBI.
Medical records are housed in records or file rooms of hospitals, clinics, and doctors’ offices. The records room is "the crossroads of the hospital," says Jerry King, who directs the Medical Record Department at the NIH (1). King says that "everybody comes through here," and by "everybody" he means patients and all the people who care for them. The shelved folders in his records room now number about 125,000.
Every few months, an 11-year-old girl named Jenny comes to the NIH hospital. She has congenital adrenal hyperplasia (CAH), which means she was born with an adrenal gland that produces too little of some hormones and too much of others.
One hormone she has too little of is cortisol, a hormone involved in the regulation of salts. A symptom of Jenny’s condition is a hunger for salty foods, like potato chips. "Mom notes daughter’s salt cravings," says one entry in Jenny’s record. Some girls and women with CAH show some masculine behaviors, because they produce too much of the male sex hormone androgen. Jenny’s record says that she has a "history of being aggressive," which may indicate that she too produces too much androgen.
Jenny’s record grows with each of her visits to the hospital. Hospital staff record the results of every treatment and test, and they note her symptoms and reactions. They also write down all instructions that they have given to Jenny and her parents about treatments she should receive at home. Sometimes, the doctors and nurses record personal notes about Jenny’s daily life, apart from her illness. For example, her record indicates that Jenny "gets good grades" at school and is "active with sports -- basketball, baseball."
Jenny is participating in a research study, as are all other patients who come to the NIH hospital. Architects designed the NIH hospital such that patients' beds would be close to research laboratories. Scientific findings could be transferred efficiently "from bench to bedside;" patients’ responses to their therapies serve as data for the researchers’ experiments. 
Care is free for all patients (it is paid for by the federal government), which means that King’s department, unlike medical record departments "on the outside," does not have to send out bills.
Jenny and her family live in Kansas, but willingly travel regularly to Maryland so that she can be treated by a doctor with the resources to try out a new approach. When Jenny first became ill, her doctor in Kansas treated her with standard therapy for CAH, which involved replacing the missing cortisol. But the researchers at NIH suspect that patients with CAH can benefit from having less androgen, and they are giving Jenny and other patients in the study a drug that destroys androgen’s ability to act in the body.
Experimental treatments like the one that Jenny is part of are called "protocols." Currently, about 900 protocols are underway at NIH. Many protocols, including the one Jenny is on, test how well new drugs work in difficult-to-treat diseases; other protocols investigate biological processes -- how they work normally or fail to work when people become ill.
Investigators must apply to the clinical directors of their institutes, the Institional Review Board (which evaluates each protocol), and the hospital director for approval of their protocols. This approval process ensures that protocol proposals are safe for patients and that the hospital has enough resources to support the research. Recently, King and his staff established a Protocol Coordination Service Center to manage all of the administrative paperwork for the protocol process, including checking to see that investigators’ application forms are properly filled out and approved.
Publicizing NIH’s research studies on the internet is another important responsiblity of the Center. Facts about each protocol -- such as the type of disease being studied, a summary of the study, the gender and age of eligible participants -- are posted on the NIH homepage. Jenny’s doctor in Kansas found out about the CAH study through this website, and he referred her to the NIH where he felt she could receive better treatment than in Kansas.
Right now, medical records in most hospitals include both electronic and paper files. But doctors in distant hospitals -- in Kansas and Maryland, for example -- find it extremely difficult and cumbersome to communicate under the current medical record-keeping system, because a paper record can only be in one place at a time.
King says that medical record administrators and health care professionals all over the country would like to convert medical records to electronic files. Then, Jenny’s doctor in Kansas could see her NIH record at any time and vice versa. King doubts that computers will fully take over the medical record-keeping process in the near future. The physician’s notes -- the "guts" of the patient record -- historically have been written by hand, and physicians who did not grow up in the computer age may be uncomfortable or unwilling to make the change to high technology charting. However, King believes that recent technological breakthroughs that allow physicians to "talk" to the computer -- continuous voice recognition -- will lead to full electronic record keeping in the next four to eight years.
"One of the standing jokes at our annual conventions," King says is that "no one ever plans to do this job...you just fall into it." And his own story illustrates this well. King was an insurance broker but was interested in changing his career. He chanced upon an article called "Hot Careers for Women" while leafing through a Redbook magazine his wife had bought. "Medical Records Administrator" was one of the professions listed, and the brief description piqued his interest. King went back to school to get a degree in records administration and ended up following a career path that landed him squarely at the crossroads.
